Highlights of Hope
Total Page：16
File Type：pdf, Size：1020Kb
HIGHLIGHTS OF HOPE | FEBRUARY 2018 2 A Rare Combination | 4 Prestigious Award to Study Colon Cancer | 5 Science on Saturday | 6 Coming Together to Take on Parkinson's Disease 7 Lighthouse Group—The Power of Community Action | 8 Couture for a Cure | 10 Hope on the Hill 12 A Conversation About Osteoporosis | 13 Event Photos | 16 Sponsors | 18 Igniting Spirit and Taking on Cancer 20 Sally Schaafsma, Purple Community Volunteer | 21 A Legacy Of Generosity—Alvin And Hylda Tuuk | 22 Memorials & Tributes RESEARCH A RARE COMBINATION Science and philanthropy team up to help patients with little-known diseases A bench-to-bedside effort to better The Outliers Program itself is a prime understand and treat rare diseases aims “These patients deserve example. It is completely funded by to provide answers where there are now donations, including a grant from Wells only questions. the best we can give. Fargo that helped establish the program, and continuing support from Steensma “Rare diseases are often understudied, They deserve answers and and Williams’s own colleagues through which is a real problem when it comes to effective treatments— VAI’s Employee Impact Fund (EIF), which is helping patients,” said Dr. Matt Steensma, sustained by the Institute’s employees. a scientist at Van Andel Institute, a surgeon that's what we hope to at Spectrum Health and an assistant “The support our colleagues provide professor at Michigan State University. “It’s accomplish.” through the Employee Impact Fund makes very difficult to tell someone, ‘we know what a world of difference,” Steensma said. “With you have, but we don’t know what to do - Dr. Matt Steensma the OES project, for example, it allowed about it.’” us to verify our initial results and create patients had ever been diagnosed with the a model for the disease that is also now More than 7,000 such disorders have disorder, which causes severe lesions on being used in a broader setting to study been identified to date; some, like Aicardi the scalp and debilitating bone growths KRAS in colon and pancreatic cancers.” syndrome, affect only a handful of people, on the jaw. while others, such as neurofibromatosis In May, Steensma’s team was awarded a type 1, affect thousands but still fall below Using samples from one of Steensma’s second round of EIF funding, this time to the 200,000-person cap that marks a patients, the team identified the cause of support research into Aicardi syndrome, condition as rare. An estimated 25 million the disease—a mutation to KRAS, one of a disorder that almost exclusively affects people in the U.S. have a rare disease, a the most heavily studied cancer genes. This females and that is characterized by large proportion of whom are children. discovery placed OES, unquestionably a developmental problems in the brain and rare disease, in “the middle of the incredible eyes that may lead to seizures, learning “These patients deserve the best we science and innovation surrounding KRAS," disabilities and blindness. There have been can give,” Steensma said. “They deserve Steensma said. fewer than 60 documented cases of the answers and effective treatments—that’s disease in the world. what we hope to accomplish.” “More importantly, our care of the patient was changed for the better. Now we know Finding the underlying mutations that Going after the outliers that there is an increased risk of cancer, cause a rare disease like OES or Aicardi About eight years ago, Steensma teamed and we can monitor for it appropriately,” often has broad implications; because the up with Dr. Bart Williams, a bone disease Steensma said. “This project was a systems that keep our bodies healthy and expert and now director of the Institute’s wonderful collaboration between the strong functioning are so intricately intertwined, a Center for Cancer and Cell Biology, to clinical expertise at Spectrum Health Helen discovery in one disease can directly impact create the Outliers Program, a unique DeVos Children’s Hospital and the scientific what we know about another. research endeavor designed to identify expertise at Van Andel Research Institute. the causes of rare diseases and to find There aren’t a lot of places in the country “We call it the ‘ripple effect’—often, the ways to treat them. Their efforts are where you can do this type of work—West science behind why a rare disease occurs bolstered by the expertise of the Institute’s Michigan is unique in that aspect.” is really the same science as why a cancer Bioinformatics and Biostatistics Core and occurs,” Steensma said. “By studying collaborators at Michigan State University The ripple effect rare diseases, we may not only come up College of Human Medicine. Progress in rare disease research can often with a way to help people battling these be hindered due to a lack of funding, with conditions but also develop treatments First up on their docket? Oculoectodermal dollars frequently going to more common for more common disorders like cancer or syndrome (OES), an exceedingly uncommon diseases such as cancer. Although this is hypertension. It really opens the window disease first identified in two unrelated beginning to change, philanthropic support to studying the underlying biology in a patients in Grand Rapids in 1993. When the remains critical for propelling this promising different context.” Outliers Program began in 2009, only 18 work forward. 2 | VAN ANDEL INSTITUTE HIGHLIGHTS OF HOPE DR. MATT STEENSMA • Exploring epigenetics in a common "...the systems that A TEAM EFFORT lung cancer keep our bodies healthy • Supporting Partners in Science, Since 2014, the Institute’s Employee Van Andel Education Institute’s hands- and functioning are so Impact Fund has supported many on scientific research program for high intricately intertwined, a research, education and community school students outreach initiatives, including: discovery in one disease • Testing potential new medications for • Establishing Rallying to the Challenge, osteoarthritis prevention and treatment can directly impact what we a meeting designed by and for Parkinson’s advocates to amplify the • Studying a method for possible breast know about another." patient voice and perspective cancer prevention - Dr. Matt Steensma VAN ANDEL INSTITUTE HIGHLIGHTS OF HOPE | 3 EDUCATION VAN ANDEL INSTITUTE GRADUATE SCHOOL STUDENT EARNS PRESTIGIOUS AWARD TO STUDY COLON CANCER Graduate students at the Institute are Why is this work important? Why did you decide to pursue science more than just students—they are NVS: Previous research from our lab as a career? up-and-coming professional scientists showed that intestinal cancer cells with NVS: I fell in love with science in high who make valuable contributions to the genetic mistakes are incapable of forming school when I discovered that there was so life-changing research that goes on each tumors when certain epigenetic machinery much more to life than I could see with my day in our labs. is disabled. This suggests that colon cancer plain eyes (i.e., microbes and cells under a cells may depend on epigenetic changes microscope). Originally, I wanted to become That’s why we’re proud to celebrate Nicole for survival and/or growth. If we can a high school science teacher, but my Vander Schaaf, the first Van Andel Institute identify these cancer-promoting epigenetic parents encouraged me to explore all of my Graduate School student to be awarded changes, we can design therapies to target career options. Having lost a grandmother funding through the National Cancer and hopefully kill cancer cells. Colorectal to colon cancer, I thought it would be neat Institute’s highly competitive F31/Ruth L. cancer is the third leading cause of to become a cancer researcher someday, Kirschstein Predoctoral Individual Research cancer-related deaths in the U.S., so these so I decided to study biology and give Service Award program, which supports discoveries have the potential to benefit scientific research a try. I did a few summer students’ doctoral research. The award thousands! research internships as an undergraduate provides more than $129,000 in research and loved the notion that research allowed funds over three years. It’s an outstanding How did it feel when you found out the me to use my intellect, curiosity and achievement and one that will help Nicole grant was being funded? creativity to potentially impact human investigate important questions that could NVS: I was excited and honored that the health. I chose to further my training help change the way we view and treat National Cancer Institute is investing in my in science and research by pursuing a colon cancer, which claims more than scientific training and in a project that has graduate degree in the sciences, which will 50,000 lives annually in the U.S. alone. the potential to help us understand what equip me for a career in research, industry drives cancer at the most basic level. or university-level teaching. We caught up with Nicole to talk about her work in the lab of her mentor, Dr. Peter The research reported in this publication was supported by the National Cancer Institute of the National W. Laird, how this grant will help move Institutes of Health under award number 1F31CA213897-01A1. The content is solely the responsibility of the cancer research forward and what got her authors and does not necessarily represent the official views of the National Institutes of Health. interested in science. Tell us about your research. What will this grant support? NVS: The goal of my research is to better understand the epigenetic abnormalities of colon cancer cells. Epigenetics is the branch of science that studies how the expression of genes within a cell is regulated without altering the cell’s genetic code.